Anyone heard of PTU?

Kailyn S

Paroxysmal Tonic Upgaze?

Apparently it's an extremely rate neurological disorder, and I'm pretty sure Finn has it.  I googled and found out some info, and a video of a little boy w/it.  My understanding is that most pedi's have never seen it before, so you need to videotape your child doing it and bring it to them to see.  I've got an appt. for Finn for Thursday, he'll refer us to a pedi neurologist afterwards, but wanted to see if anyone else knew anything about it.

Mysterious_wife

Sorry, I have never heard of it.  I just wanted to wish you the best.

jenick

I've never heard of that...just wanted to wish you luck!